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Abstract

Young-onset dementia significantly impacts the family members of the person living with young-onset dementia. This includes adolescent and young adult offspring, who are often still living at home, yet their support needs frequently go unmet. The ‘Joint Solutions Project’ sought to articulate a comprehensive system of care for young-onset dementia in Australia. It undertook research, policy analysis and engagement with people with living experience of young onset dementia to develop the system of care. The current study is part of this project and aimed to explore the needs of young people who are living with or caring for a parent with young-onset dementia in Australia. We interviewed young people with lived experience of parental young-onset dementia between 15-25 years of age (n = 10) and subjected interview transcripts to a qualitative content analysis. We describe findings according to six domains: (i) Family Structure and Roles; (ii) The Emotional Experience of Living with or Caring for a Parent with Young-Onset Dementia; (iii) Sibling Experiences and Relationships; (iv) What Helped to Manage the Situation; (v) Gaps in Support; and (vi) Support in an Ideal World. We found that young people experiencing parental young-onset dementia require support to understand the illness, anticipate changes in their parent and their family life, and access relevant services. Young people need peer support opportunities as well as respite options to ‘step back’ from caregiving roles when living with a parent with young-onset dementia. Professional services that can both support the parent with dementia and build the capacity and knowledge of their family are critical. These services are most effective where they utilise family sensitive practice. Managing the emotional and practical demands of living with and caring for a parent with young-onset dementia can be an overwhelming task for young people, who require tailored individual and family-based support.

Keywords

young-onset dementia dementia young people lived experience dementia care

Introduction

Young-onset dementia is defined as dementia diagnosed prior to age 65 years (Withall et al., 2014). Young-onset dementia significantly impacts the family members of the diagnosed individual, including adolescent and young adult offspring, who are often still living at home (Hutchinson, Roberts, Kurrle, & Daly, 2016). The support needs of these young people are frequently unmet (Aslett et al., 2019; Cartwright et al., 2021). Given the significant financial and family responsibilities that those younger than 65 years still tend to have, young-onset dementia can be associated with greater family burden than dementia that arises later in life (Arai et al., 2007). Families facing these circumstances often experience tension and conflict, changes in family roles, and financial strain (Cartwright et al., 2021), which may all have a harmful impact on the mental health and wellbeing of young people in the family. The demands of assuming caring responsibilities for their parent can impact young people’s development and plans for the future (Aslett et al., 2019; Cartwright et al., 2021; Chirico et al., 2022). Still, little is known about the most effective ways to support young people in this situation (Aslett et al., 2019).

An emerging body of research speaks to the significant impacts on young people of caring for or living with a parent with young-onset dementia. Cartwright et al. (2021) provide a synthesis of the qualitative literature on lived experiences of individuals with a parent with young-onset dementia. Their review included studies of children both under and over the age of 18 years. Lived experiences of those affected varied widely, demonstrating the need for a person-centred approach to care (Cartwright et al., 2021). Across studies, the emotional impact of having a parent with young-onset dementia variously included feelings of loneliness, resentment, embarrassment, envy of other children, anger, frustration, shame and distress. Common experiences across studies included overarching feelings of loss and grief, as well as coping difficulties (Cartwright et al., 2021).

In Australia, publicly funded support for young-onset dementia has been available through the National Disability Insurance Scheme (NDIS) since 2016 (Cations et al., 2022). The NDIS entitles people with a disability to legislated care and support (Cations et al., 2022). People diagnosed with young-onset dementia can access NDIS support if they apply prior to turning 65 years of age and meet the eligibility criteria and disability requirements. The capacity for people with young-onset dementia to access individualised support funding through the NDIS has generally been seen as a welcome alternative to the aged care system in Australia, as it offers greater agency and flexibility in decision-making by people with young-onset dementia and their families about how funding is best spent (Cations et al., 2022). The conceptualisation of young-onset dementia as a disability is also aligned with consumer-led advocacy perspectives about the impact of the condition on employment, community and social participation (Cations et al., 2022).

While some publicly funded generalist supports are available, specific service- and policy-level frameworks to support people living with young-onset dementia in Australia have been lacking. In response, the Australian national peak body for younger people living in or at risk of being placed in residential aged care (the Young People in Nursing Homes National Alliance, or YPINHNA) recently sought funding to articulate a comprehensive system of care for young-onset dementia in Australia. This incepted the ‘Joint Solutions Project’ which undertook a significant body of research and consultancy to understand and inform the current system of care. By way of various reviews, stakeholder perspectives and a suite of specialist studies, the project set out to evaluate the gaps and barriers along the pathway of care in Australia. Specialist initiatives commissioned as part of the Joint Solutions Project included industry roundtable meetings and kitchen table conversations, a national summit and national survey on young-onset dementia in Australia, a gap analysis of young-onset dementia services, and studies exploring particular topics such as legal issues in the context of young-onset dementia and systems literacy for people living with young-onset dementia.

Using data from a national questionnaire disseminated as part of the Joint Solutions Project, Loi et al. (2025) explored lived experience perspectives about gaps and barriers in services for those living with and caring for people with young-onset dementia. Results suggested that certain aspects of service provision are improving for people with young-onset dementia, but significant gaps remain in support systems, and a majority of participants reported difficulties accessing the NDIS (Loi et al., 2025). Beard et al. (2025) gathered perspectives from individuals with young-onset dementia as well as caregivers, general practitioners and community service providers and found a pressing need to improve overall public knowledge about young-onset dementia, to improve services to manage the associated psychosocial implications of young-onset dementia, to enhance the accessibility and availability of age-relevant services, to reduce bureaucracy in obtaining support and to pay attention to the financial impact of young-onset dementia on Australian families.

The current study, part of the Joint Solutions Project, specifically explored the needs of young people who are living with or caring for a parent with young-onset dementia – a previously overlooked group – to further inform an evidence-based improvement to the sector in Australia, noting that many families affected by young-onset dementia have young people still living at home. To that end, we conducted a qualitative study involving interviews with young people on their lived experiences of having a parent with young-onset dementia and their associated support needs.

Methods

Qualitative Approach and Research Paradigm

Given the lack of research that directly includes the perspectives of young people in this context, an exploratory qualitative approach was used to gain an in-depth understanding of young people’s unique experiences and needs when living with or caring for a parent with young-onset dementia. Specifically, we sought to understand the nature of interactions at the familial and systemic levels that assisted in young people’s personal coping and caregiving capacities, along with other knowledge, guidance or practical assistance that may have felt supportive to them. We aimed to construct rich, insightful accounts of young people’s experiences as told by young people themselves. Accordingly, the study was conducted from a constructivist point of view, using interpretative epistemology. This approach considers reality to be socially constructed, through the individual’s interaction with the world and others. Truth and reality are situated within the meanings individuals create according to their perceptions of their everyday lives and their own subjective experiences (Grbich, 2003).

Researcher Characteristics and Reflexivity

Data collection and analysis were led by two researchers: AB, a research fellow in psychology and family studies and KK, a PhD candidate, research assistant and social work practitioner. Both researchers have experience in interviewing individuals from vulnerable populations and were hence able to conduct the interviews in a sensitive and trauma-informed manner. Researchers maintained reflexivity throughout the process by remaining conscious of their own personal and professional experiences, knowledge and beliefs, and ensuring that these did not unduly interfere with the research process.

Context, Sampling and Recruitment

Participants were eligible if they had experience of living with or caring for a parent with a diagnosis of young-onset dementia between 14-25 years of age and this was not more than 10 years in the past. This age bracket was designed to align with commonly accepted conceptualisations of ‘young people’ variously stating age bands from between 12-15 up to 24-35 years (Australian Institute of Health and Welfare, 2021; Zebrack, 2011). Participants in our sample (n = 10) were aged between 15 and 34 years at the time of the study and were all Australian. Nine of ten participants identified as female, and one as non-binary. At the time of the study, five participants were living with their parent with young-onset dementia and the remaining five were no longer living with their parent with young-onset dementia. For those no longer residing with their parent, circumstances variously included the parent with young-onset dementia having moved to a supported accommodation facility outside the family home; the parent had remained living at the family home but under the care of their spouse while the young person had moved out; or the parent had since deceased.

Participants were purposively recruited via email, through the Young People in Nursing Homes National Alliance (YPINHA)’s existing research network including sites and institutions already working with families impacted by a relative’s young-onset dementia. The recruitment flyer summarized the project and prompted interested parties to access the online Participant Information Statement and Consent Form (PICF). Where consent forms were completed, a research team member was notified, who then contacted the interested party via email to schedule an interview. This process protected participants’ anonymity, and thus provided assurance that their relationship with, or access to, services would not be affected if they chose not to take part. For participants aged under 18 years (n = 1), parental consent as well as participant assent was obtained.

Ethical Considerations

Ethical approval was provided by the La Trobe University Human Research Ethics Committee (HEC24523). Participation was voluntary and participants provided informed consent via the online PICF prior to participation. It was made clear to participants that they had the right to refuse to answer any question, and the right to terminate the interview at any time. Participants were able to withdraw from the study at any time until two weeks following their interview. All information from the interviewees was confidential and stored on a secure database. Identifying information was removed prior to analysis, and results were reported at the group level. Participants were reimbursed for their time with a $100 digital gift card, sent via email at the conclusion of the interview.

Data Collection and Processing

One-on-one semi-structured interviews of 45-60 minutes in duration were conducted between March and May 2025. See Table 1 for a copy of the interview guide. Given the geographic spread of participants across various states in Australia, interviews were conducted via Zoom videoconferencing software.

Table 1.

Interview Guide and Corresponding Thematic Domains

Question	Corresponding domain
Can you describe your family to me? What does your day-to-day life look like?	i) Family structure and roles
In your own words, how would you describe the experience of living with or caring for a parent with young onset dementia?	ii) The emotional experience of living with or caring for a parent with young onset dementia
Do you have any siblings living with you in the family? - How do you think living with or caring for a parent with young onset dementia has affected them? - Has it affected your relationship with your sibling/s?	iii) Sibling experiences and relationships
Thinking back over your experience, what would you say has been helpful in managing this situation?	iv) What helped to manage the situation
Have there been any services or providers that made an important difference to you in handling that situation? Can you elaborate on what they have done and how this impacted you?	iv) What helped to manage the situation
Have there been areas you would have appreciated help with but could not find the right help at the right time?	v) Gaps in support
In an ideal world, what would support for you and your family look like?	vi) Support in an ideal world
Is there anything I did not give you the opportunity to speak about, but you consider important for me to know in the context of this interview?

Participants were offered the opportunity to have any questions answered prior to starting the interview. Interviews were recorded and transcribed verbatim for subsequent data analysis. To protect participants’ identity, names and potential identifiers were removed from each interview transcript.

Data saturation, i.e., the point at which no new information emerged, and interview data began to replicate (Guest et al., 2006; Saunders et al., 2018), was reached after 10 interviews. Following this, no further attempts to recruit and contact participants were made. Our final sample size is consistent with those justified in prior studies employing similar qualitative methodologies (e.g., Constantinou et al., 2017; Guest et al., 2006).

Data Analysis and Methodological Integrity

We subjected interview transcripts to a qualitative content analysis (Bengtsson, 2016; Hsieh & Shannon, 2005) to understand themes in the data. In line with the interview structure, six domains for extraction were defined prior to analysis: (i) Family Structure and Roles; (ii) The Emotional Experience of Living with or Caring for a Parent with Young Onset Dementia; (iii) Sibling Experiences and Relationships; (iv) What Helped to Manage the Situation; (v) Gaps in Support; and (vi) Support in an Ideal World. Using a standardised coding table, one independent coder extracted and coded transcript data. Codes and themes were reviewed by a second independent coder. Data analysis occurred across four stages: (a) decontextualisation (deconstruction of the transcript into meaning units); (b) recontextualisation (identification of codes); (c) categorisation (identification of themes); and (d) compilation (drawing of group-level conclusions and variations, with conferencing between coders and checking of the original text).

Results

A summary of findings from each domain is presented below, with illustrative quotes from interview transcripts included to highlight the nature of participant perspectives.

Family Structure and Roles

This domain summarised the structure of participants’ family lives when living with a parent with young-onset dementia; that is, how the dementia re-shaped the interplay of family member roles and responsibilities including personal, employment, study and caring responsibilities.

Many young people described the changing structure of the family unit in the context of the diagnosis, including significant changes in family roles. This typically involved new caregiving and employment responsibilities for young people, and a changing lifestyle for the parent with young-onset dementia. Participants noted that their parents with young-onset dementia were either working less or had ceased paid work altogether. For some, support workers had become integrated into the family’s day-to-day home life due to the intimate and long-term nature of the care required. When participants experienced changes to their living situation – i.e., if they moved out of the family home or if their parent moved into a care facility – they typically maintained a strong sense of responsibility to their family including the parent with young-onset dementia. As one young person explained:

It's exhausting emotionally and physically sometimes…Even if I'm not doing it [providing care], I'm thinking about it. It affects every aspect of my life because I may not be actively there, but then I've got the guilt. And then when I am there, I often need like my own respite, to recover afterwards because it can be incredibly emotionally challenging. (09)

Young people experienced significant challenges in balancing their personal, work and study commitments alongside caring responsibilities at home. Some described an overall experience of family cohesion, while others experienced an exacerbation of existing difficulties within the family unit in the face of added stress. Where there were difficulties, some young people coped by avoiding the family home:

We don't have a break. We are either at school learning or coming home just to take care of people and we don't really have that much time to look after ourselves. That's why I'm always out…'cause like if I'm home, I have to care for people. If I'm out with my friends, I can just kind of relax. (02)

The Emotional Experience of Living with or Caring for a Parent with Young-Onset Dementia

This theme described the overall emotional experience of having a parent with young-onset dementia. Participants described various aspects of parental young-onset dementia as bringing about particular feelings, detailed below.

The process toward formal diagnosis of young-onset dementia was often prolonged and complex for the parents of young people in our sample, which exacerbated participants’ stress and anxiety in the context of their uncertainty about what was happening for their parent. After the diagnosis, most participants described initial feelings of isolation and confusion. Young people in our sample also experienced a profound sense of anticipatory grief in the face of the knowledge that the disease is progressive:

There's a lot of grief and like complex grief, because it's someone who's simultaneously there, but not there. It's difficult because grief, especially in Western society, is very kind of stigmatized and like, not talked about. And then even more so with dementia. But then it [providing care] is also a really rewarding and loving experience. It's taught me a lot. So a very mixed bag [of emotions]. (01)

The behaviour and mood changes that come with dementia were experienced by young people as confronting and challenging. Participants found it difficult when the parent was no longer ‘themselves’ and no longer able to function as they had previously:

I think the agitation and aggressiveness is definitely the hardest. Because you know that's not actually them and their personality and them as a person. (01)

At times, young people were excluded from decision-making regarding care planning for their affected parent and this added to feelings of isolation and family strain. Young people reflected on the persistent stigma and lack of understanding surrounding the illness, in their immediate networks but also among health professionals and broader systems. At times this was felt to be belittling. As one participant explained:

The times that my mum's been in a certain hospital, they have just really not been understanding. They're like asking her questions, and I'm like, can we stop asking questions? Like, I'll answer the question. She doesn't need to, but they're just very belittling. (09)

In the context of changes to family life, participants described a process of shifting the focus from their own emotional experience and needs towards those of the family unit:

I really centred myself in that immediately when she was diagnosed, I was like, “Oh my God, I'm 19 and my mum has this and my life is over” and….when I think….when you kind of go through the motions like we have for the past five years, you learn to decentre yourself. (03)

It was an interesting dynamic shift when she all of a sudden had to become the person that was being looked after. But it was quite isolating, particularly because it was so demanding, like it was physically demanding. It was emotionally demanding. (08)

Several participants also described a sense of uncertainty about their own future in the context of their parent’s diagnosis. It became hard for young people to make plans for study and work when they were unsure what the future trajectory of family life and caring responsibilities would look like.

Importantly, some young people described positive elements of their experience such as a newfound closeness with the diagnosed parent or with their siblings. Specifically, young people acknowledged the experience of caring for a parent with young-onset dementia can bring about increased maturity and sense of responsibility and stronger family relationships:

We didn't have much of a relationship prior to mum being sick, but now we have a really strong relationship and it does sometimes blur the line between almost coworkers. (03)

Sibling Experiences and Relationships

This domain summarised participants’ reflections on how living with a parent with young-onset dementia affected their siblings, and whether the situation had affected their own relationship with their siblings. Several participants noted the different coping styles that different siblings in the family had, reflecting that various factors such as temperament, age and gender seemed to play a role. For example, some young people described being parentified from a young age due to being the oldest sibling in the family:

Being the eldest child and having to be the parent to your parent and having to think about what needs to be done...It's obviously a pretty big mental and emotional load, so I think that it meant there was resentment in those relationships. (06)

For some, sibling relationships were strengthened in the context of the diagnosis and featured mutual support. This was attributed to the closeness brought about by the intimacy and demands of the shared caregiving role:

As we've gotten older, I feel like it’s brought us together and it's really nice. Even if at times it's like, brother-sister dynamics, to have someone that just knows and understands it all

and has been there through everything has changed our relationship. (01)

For others, there was strain and ongoing resentment where the caring load had disproportionately fallen across siblings in the family or where the overall stress and pressure had exceeded the family’s coping resources. Importantly, strong familial relationships and guidance from the non-affected parent appeared key for positive relational outcomes.

What Helped to Manage the Situation

Participants were asked to reflect on what had helped overall to manage the situation for their family, and whether any particular services or providers had made an important difference. Participants described various realms of support including formal supports, practical supports, and social and emotional supports. Formal supports included therapy for some or all family members, and planned activities for the young person and parent. Practical supports included assistance with cleaning, gardening, provision of funded in-home supports for their diagnosed parent, and financial assistance via bursaries. These alleviated pressures for the family unit and consequently the young person. For some, financial support was key to taking the pressure off needing to engage in paid employment and therefore being able to remain in study.

I have a counsellor from [provider], a free service that has been like so, so helpful. I also see a therapist normally anyway, but to have that extra counselling support from someone that understands dementia so deeply and just grief and family dynamics really helped a lot. (01)

Tailored support for the parent with young-onset dementia was seen as essential. This involved a professional who understands the specific needs of the person living with young onset dementia to provide appropriate support. As one participant explained:

The shining star for mum has been support work. She has one main carer who is just absolutely incredible. There's no doubt that if she didn't have this one carer, she wouldn't be where she is today. And that has, as a byproduct, made a world of difference for us. (03)

Having a quality care team for the parent with young-onset dementia also provided significant benefit to the family unit:

We're now finding really good providers for the housing and support workers that really, passionately care about my mum and giving her quality of life. It actually felt so much less stressful. I felt like I was getting my mum back a lot more in my relationship with her because her mood, energy, everything improved so drastically and allowed me like live a better life. (01)

Some participants had received family assistance to navigate the service system through a specialist care coordinator via a specialist dementia organisation. While funding for this program was later discontinued, they described it as incredibly helpful while available. This helped families navigate the NDIS and alert them to the breadth of services available. Continuity in care played a role, such that some young people described certain support workers becoming ‘part of the family’:

[Carer] was like a godsend. Like she really became integral part of the family and was the most reliable person in our care journey. She's the one who is doing the practical day-to-day caring support. (06)

Young people found it helpful when their parent with young-onset dementia was engaged in activities that were enjoyable, meaningful and of interest to them; they felt this allowed their parent to experience a quality of life particularly given the terminal nature of the illness and their own feelings of helplessness to assist in other ways:

It was even doing all the groundwork in finding meaningful activities for mum that she can engage in that were areas of interest. That was really important to us, that we kept things going or that we got her involved [in] different groups, so that a few times a week she was doing something that she enjoyed and that was meaningful for her. (05)

Finally, informal supports such as peer connections were critically important to young people. When young people understood that they were not alone in their experience, for example through connections with others facing similar circumstances, the emotional burden was significantly lifted.

Gaps in Support

This domain summarised the gaps in and barriers to appropriate support. Young people reflected on limitations in the accessibility of services (for themselves, the parent with young-onset dementia and the rest of the family) due to the time, location, or demographic of the support group. For example, one participant described a spousal carer group which only operated during business hours:

My mum has had a carer support group that she started going to online around COVID, which she didn't have access to in the earlier part of his journey, because all of the care support groups were only run during business hours and she worked full time still so she couldn't go to any of them. (06)

Young people were often unsure about where to access professional support and noted that dementia services were generally aimed at older adults, and older onset dementia. They reiterated a need for improved accessibility of information, and suggested such information and resources be made available from the first point of contact with services. They described the need to rely on their non-diagnosed parent for guidance on where to access support yet were reluctant to do so given how overburdened this parent already tended to be.

For those whose parent was no longer able to live in the family home, some noted a gap in appropriate accommodation options:

I think having someone or even just a list of nursing homes that are willing to would have helped so much because the amount of phone calls or tours we did to then be told as soon as we put an application in, “no”… (05)

Support in an Ideal World

Participants were asked to describe what support for them and their family would look like in an ideal world. Several suggested a ‘roadmap’ for the family from the outset when facing a diagnosis of parental young-onset dementia. They indicated the need for a framework to understand the illness, the changes to expect, ways to give support to their parent with young-onset dementia and ways to get support for themselves and their family.

Young people identified a pressing need for early, accessible and tailored support across the family’s journey with young-onset dementia. Optimally this would occur with someone who understands young-onset dementia, knows the family, and knows the system. It should occur with someone who can meet the family where they are at, including the current (and changing) level of functioning of the parent with dementia:

I think there should be those services put in place even when the person is starting that assessment process. As soon as you're aware of the family, especially those young kids, because we know how long it takes to get to a diagnosis, so those interventions need to be in place from the day that they're accepted in the assessment clinic. (06)

What we need is a navigator or a single person who is allocated to you as a care coordinator who navigates the system and tells you what you need to do, and when you need to do it, and follows you up and actually knows you and your individual family and what you know. Connects you with the supports. (06)

Young people facing these circumstances often felt a great sense of responsibility yet tended to mute their emotional responses to avoid adding to family strain or over-burdening the non-diagnosed parent. In this context, young people highlighted a real need for a space to step out of their carer role.

Young people described a need for more public awareness of young-onset dementia generally. This was noted in the context of both informal (i.e., social support networks) and formal contexts (i.e., healthcare services):

In an ideal world everyone would [be] more understanding of grief and dementia and illness and disability… I guess all these things wouldn't be as stigmatized and the world would be made accessible for disability and for dementia. (01)

Doctors, nurses, hospital staff, they're just not prepared, not educated. Having someone to come in and be able to advocate in that moment would have been incredibly helpful because it's already really stressful. (05)

Finally, young people urged for recognition of young-onset dementia as a palliative condition that requires specialist care, not just a generic disability approach:

There's no actual practical services that are unique to younger onset dementia. It's just generic disability care, which doesn't fit the very unique needs of this population or their loved ones or carers. (06)

Discussion

The current study explored the lived experiences and support needs of young people who are living with or caring for a parent with young-onset dementia in Australia. Participants in our sample faced the significant challenge of balancing the demands of adolescent or young adult development alongside their caring responsibilities in the family. For adolescents and young adults, caring for an unwell parent can be considered developmentally ‘off-time’ as this typically occurs later in life; being unable to attend to the normal developmental tasks of being a young person can be particularly damaging (Allen et al., 2009). As others have reported, the young people in our sample found the experience of parental young-onset dementia to be at odds with their expectations of their life stage, out of sync with the lives of their peers (Aslett et al., 2019; Chirico et al., 2022), and accompanied by significant future uncertainty (Millenaar et al., 2014; Sikes & Hall, 2017).

Something universally important to young people in this study was the need for others to understand their situation. Empathy and solidarity are vital to bolster young people against the feelings of isolation and stigma that are common when experiencing parental young-onset dementia. Echoing previous findings (Aslett et al., 2019; Hutchinson, Roberts, Daly, et al., 2016; Johannessen et al., 2016), there is a significant need for young people facing these circumstances to have access to meaningful peer support groups. Young people find value in connecting with others who can understand and empathise with the lived experience of having a parent with young-onset dementia.

As others have found (Gelman & Rhames, 2020), young people in this study often felt a great sense of responsibility to their family and the parent with young-onset dementia. This parentification of young people caring for a parent with dementia is common and clearly highlights a need for specialist support including options for respite from caring responsibilities. Significant changes to family roles highlighted here and by prior studies (Aslett et al., 2019; Chirico et al., 2022) emphasise the potential for considerable disruption to relationships and functioning within the family unit in this context. Young people in our sample suggest the maintenance of strong familial relationships is facilitated by guidance from the non-diagnosed parent. In this light, promoting relational strengths within the family system itself appears key to positive outcomes and may represent an important area for targeted support.

The fact that young-onset dementia is often conflated with dementias of older age means that it is difficult for young people to get the recognition and support that they need. General education and more awareness raising about young-onset dementia is needed to improve the experience for young people in a caring role in their lives outside the family. This includes information, support and access to services for young people, as well as family members, peers, teachers and professionals. This could occur through education via school settings; fostering engagement with support workers through strong relationships and trust with young people; leveraging technology use among young people, including chat groups and online forums; and dissemination of accessible information via social media. Others have noted the potential benefits of technology and social media for promoting connectivity between young carers more broadly (Hutchinson, Roberts, Daly, et al., 2016). For example, social media usage can offer avenues for reducing stigma, promoting knowledge and a sense of solidarity, and normalising help-seeking behaviour.

As has been previously suggested by young people in other studies (Beard et al., 2025; Johannessen et al., 2015; Millenaar et al., 2014) as well as by those in our study, families facing young-onset dementia need a designated person to work with them and connect them with relevant professionals and services. This would optimally be someone who has specific knowledge about young-onset dementia and the support services available to the particular family. Several people in our sample mentioned that a case manager or support person would be invaluable in directing their care pathway. In fact, this model of care was available for families managing young-onset dementia in Australia between 2013 and 2019 as part of the ‘key worker’ program, which was highly valued but discontinued (Cations et al., 2022). In the context of current policy attention to the needs of families facing young-onset dementia, this would be a prudent funding target given the findings of the current study as well as prior calls in the literature.

As young-onset dementia affects family members in distinct yet interrelated ways, a family systems approach to support is needed. This would appreciate individual experiences as well as the needs of the whole family unit and prioritise proactive yet flexible responses to the shifting needs of children and parents. The findings of many other studies in this space have led to the same recommendation (Barca et al., 2014; Gelman & Rhames, 2018; Hutchinson, Roberts, Daly, et al., 2016; Hutchinson, Roberts, Kurrle, & Daly, 2016; Millenaar et al., 2014; Svanberg et al., 2010). Whole of family approaches should appreciate the needs of everyone in the family and respond to them in an age-appropriate way at the level and pace that feels appropriate to each family member. These approaches can potentially reduce the burden on young people and help them to maintain fulfilling relationships with their affected parent as well as with the rest of the family.

Strengths and Limitations

Our study adds to a small but growing body of literature on the experiences and needs of young people who have a parent with young-onset dementia. Our findings represent the perspectives of one specific group of young people and are not generalisable to other groups of young people, though they may be relevant to other young carers and their families beyond the young-onset dementia realm (i.e., carers for other disabilities or ongoing health conditions). This study is one of several Australian studies on the lived experiences of young people with a parent with young-onset dementia (Beard et al., 2025; Hutchinson, Roberts, Daly, et al., 2016; Hutchinson, Roberts, Kurrle, & Daly, 2016; Loi et al., 2025) and has been conducted in the context of a recent policy impetus to improve the sector in Australia.

It is important to note that our sample was not balanced in terms of gender. Of ten participants, nine identified as female and one identified as non-binary. This may reflect the tendency of caring responsibilities to fall disproportionately on women (Australian Bureau of Statistics, 2018), or a tendency for women to more readily engage in research opportunities.

It is also possible that the recruitment process may have biased those with fewer family or work responsibilities. However, interview time slots outside regular working hours were offered to participants in an effort to address this limitation.

Conclusions

Young people experiencing parental young-onset dementia require specific support to understand the illness, anticipate changes in their parent and their family life, and access relevant services. Young people need peer support opportunities as well as respite options to ‘step back’ from caregiving roles when they are managing the demands of living with or caring for a parent with young-onset dementia. In Australia, as in other countries (Cartwright et al., 2021), there appears to be an overall lack of knowledge and understanding of young-onset dementia by both professionals and the general public which contributes to young people’s feelings of isolation and loneliness. Training for practitioners and in organisations is needed such that professionals working in the area can continuously build on their skills and knowledge and be in a position to meet families and young people where they are at with an appropriate and flexible offering of supports.

Findings from the current study are consistent with those from Australian studies on young people’s experiences of parental young-onset dementia conducted nearly ten years ago (Hutchinson, Roberts, Daly, et al., 2016; Hutchinson, Roberts, Kurrle, & Daly, 2016) which highlights the continuing problem of limited availability of age-appropriate services for adolescents and young adults facing these challenging circumstances. Calls for a fundamental shift in the development of inclusive cross-sectorial work by service providers across both youth and dementia services (Hutchinson, Roberts, Daly, et al., 2016) must be reignited. Managing the emotional and practical demands of caring for a parent with young-onset dementia can be a taxing and all-consuming role for young people, who require tailored individual and family-based support to be able to move forward with their own development in the face of significant stress and grief.

Footnotes

Acknowledgements

We thank all young people who participated in this research and acknowledge their invaluable contributions.

Booth Anna

Krella Kristel

Painter Felicity

Kuntsche Sandra

Ethical Considerations

Ethics approval was provided by the La Trobe University Human Research Ethics Committee (HEC24523).

Consent to Participate

Written informed consent for participation and publication was provided by all participants.

Consent for Publication

For participants under 18 years of age, both written assent and parental consent were obtained.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The Bouverie Centre at La Trobe University was funded by the Young People in Nursing Homes National Alliance to conduct this study.

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data Availability Statement

Given their sensitive nature, data for this study are not publicly available.*

Author Biographies

Dr Anna Booth is a Research Fellow in psychology and family studies at The Bouverie Centre, La Trobe University. Anna’s research has focused on infant mental health, attachment, family stress, family violence, and maternal & child health. Anna has a keen focus on research translation and works in partnership with government and community sector stakeholders to better understand and support the needs of vulnerable Australian families and children.

Ms Kristel Krella is a PhD candidate at the Bouverie Centre, School of Psychology and Public Health, La Trobe University. Kristel’s research focuses on enhancing safety for families affected by domestic and family violence and improving systems through multidisciplinary collaboration and promoting lived experience perspectives. She is interested in using research to initiate and support policy-level change for vulnerable families, and in identifying mechanisms to translate this research into practice. Kristel is also a qualified social worker with experience supporting vulnerable children and families across statutory, healthcare and community service organisations.

Dr. Felicity Painter is a post-doctoral research fellow at the Bouverie Centre, La Trobe University. Felicity holds a PhD in developmental psychology, with her research focusing on family functioning and child-parent attachment. Felicity’s primary research interest pertains to early relational health and the promotion of positive social and emotional development across the life course. Felicity works collaboratively across research projects at the Bouverie Centre, contributing to the development of evidence-based practice for family therapy and work in family trauma contexts.

A/Prof Sandra Kuntsche is a psychologist and researcher with over 25 years of experience in family and alcohol research. Dr. Kuntsche leads the research program at The Bouverie Centre, Australia’s largest specialist family therapy organisation and an integrated practice-research centre of La Trobe University

Mr Alan Blackwood leads the Young People in Nursing Homes National Alliance’s substantive work in the areas of policy analysis, development and advice. He has authored and co-authored submissions to government and other inquiries. He has served on a number of representative bodies and has a deep knowledge of issues affecting people with disability. Alan recently led a project to develop and trial consumer-led governance and decision-making approaches in settings where people share supports. Alan has provided direct advocacy assistance to individuals and families and has built extensive networks across the health, disability and housing sectors in Australia.

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Support Needs of Young People Who Have a Parent With Young Onset Dementia: A Qualitative Study

Abstract

Keywords

Introduction

Methods

Qualitative Approach and Research Paradigm

Researcher Characteristics and Reflexivity

Context, Sampling and Recruitment

Ethical Considerations

Data Collection and Processing

Data Analysis and Methodological Integrity

Results

Family Structure and Roles

The Emotional Experience of Living with or Caring for a Parent with Young-Onset Dementia

Sibling Experiences and Relationships

What Helped to Manage the Situation

Gaps in Support

Support in an Ideal World

Discussion

Strengths and Limitations

Conclusions

Footnotes

Acknowledgements

Ethical Considerations

Consent to Participate

Consent for Publication

Funding

Declaration of Conflicting Interests

Data Availability Statement

Author Biographies

References